Ghosts of Christmas Past

Ghosts of Christmas past
Memories yellow and fade.
Haunted and forlorn.

© big D 2014

“I hate you for all the years I 'll have to live without you. How can a heart hurt this much and still go on beating? How can I feel this bad without dying from it?
I 've bruised my knees with praying to have you back. None of my prayers have been answered. I tried to send them up to heaven but they 're trapped here on earth, like bobwhites beneath the snow. I try to sleep and it's like I 'm suffocating.
Where have you gone?
Once you said that if I wasn't with you, it wouldn't be heaven.
I can't let go of you. Come back and haunt me. Come back.”  ~ Lisa Kleypas

“Something was bleeding… and something was broken. It was my heart… because I had to leave you.” 
― Kimberly Brockman, Raven

“Is it ghosts that truly haunt us, or the memory of our own mistakes that we wish we could undo?” 
― Laura Lam, Shadowplay

Christmas Eve

Climb the mountains and get their good tidings. Nature's peace will flow into you as sunshine flows into trees. The winds will blow their own freshness into you, and the storms their energy, while cares will drop away from you like the leaves of Autumn.” 
― John Muir, The Mountains of California

It is Christmas Eve...another year without you.
There is a deep longing to have you here.
It doesn't matter.
The pain is a constant.
The sorrow seeds my soul
Darkness seeps through my veins.
There is nothing I can do to bring you home.
There is nothing I can do to change what has happened.
My world is stark like the words on this page.
There is no color...none of the twinkling lights, the reds, the greens, the bright lights of joy and peace.
My light has burned out...there is a short circuit, a bad bulb...
A tangle of emotions that cannot be fixed.
Your death has shattered my world.
The fragments of my life are crushed by those rushing to and fro.
Christmas means nothing if you are not happy.
It is a horrible time that I try to survive.

I wish you could see the mountains too.  I love you my sweet boy.  I love you always and forever.

Thanksgiving

How long have I been
Living under darkest skies?
Since the day you died.

© big D 2014

Another Thanksgiving without you here Nickolas.
You would have been so very proud of Sara...
She had everyone at her place and her and Dad did all the fixing and cooking.
It will never be the same without you here.
My heart aches for you every day.
I love you so.  Mom

“Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.”             ~Khalil Gibran

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.”   ~Rumi

Happy...Oops, You Are Dead...Never Mind

A Birthday Wish

Your birth brought me joy
Your death has destroyed my world.
Wishes don't come true.
Blow out the candles
You are never coming back.
Everyone go home.

© big D  2014

Bones shake, it's lonely it's late
Footsteps, echo, glimmers of hate
Howling candles are blowing a sound
Why can't I tell you it's all going down?
And there's a sadness deep down in my soul
Hard times just won't let me go

I need you to help me through
I can't lay these ghosts to rest
Though I'm scared, and it's dark
Oh, I know it's all a mess,  their faceless
And headstrong, I got them starring back at me
But my will still strong, I won't let them take me in
I won't let them take me in

Angels crying, lost in shame
Demons laughing, playin' the game
And there's a sadness deep down in my soul
Hard times just won't let me go

I need you to help me through
I can't lay these Ghosts to rest
And though I'm scared and it's dark,
Oh, I know it's all a mess, their faceless
And they're strong, I got them starring back at me
But my will still strong, I won't let them take me in

Days roll on from dust to dawn for all the time, all the time
My faith is grown, the seeds we've sown, alright, alright
There's a sadness deep down in my soul
I need you to help me through
I can't lay these ghosts to rest
And though I'm scared, and it's dark
Oh, I know it's all a mess, their faceless
And headstrong, I got them starring back at me
But my will is still strong, I won't let them take me in
I won't let them take me in
I won't let them take me in
I won't let them take me in

(Song - Ghosts  by Laura Welsh)

And Gold Turns To Gray

So I have lost all track of time...I guess it doesn't matter.  This was the "mini-mental" Nick did when he was admitted for his bone marrow transplant.  I wanted to put these up on the dates that things happened.  I guess it doesn't matter....nothing seems to matter.  I remember that admission so clearly...that was only his second time "admitted" to the hospital.  Although he had spent most of the summer getting toxic chemicals shot into his spinal fluid via a lumbar puncture which left him completely incapacitated by horrible spinal headaches.  The fact that this was his "last" "healthy" summer seemed not to matter at all to those at the hospital we told about this unfortunate side effect.  I do remember one of the nurses "lecturing" or scolding me about my use of the word incapacitated, because I needed to be lectured or scolded. I think she thought it was her job at the time to let me know, Nick was in great shape compared to a lot of the other living corpses walking around that effing cancer center.  But she was wrong she didn't need to let me know that, cause I already knew what could happen and I prayed to God it wouldn't. How wrong I was about that!  And how I would have liked to take the nurse to Nick's death bed and ask her if his condition qualified now?  I just wanted my son to be able to enjoy the time he had before all the effing shit hit the proverbial fan.  Shouldn't someone have figured out that all he needed was a small dose of steroids added to the chemical cocktail to eliminate the headaches (like they figured out the next time he had to go through it which would be in January 2009 when his leukemia relapsed in his spinal fluid)!!!!  The bottom line is they didn't care.  Nick was just a number to most of the people...especially in those early days.

On this admission,  although we were all very scared, at that time we still had hope.  Hope that everything would be alright and Nick would come through the BMT alive and hope the BMT would actually work and rid Nick's body of the leukemia.  On that admission, this is what Nickolas wrote....

 "The sea calls and the wind blows strong."

At the time we had no idea....what was coming.

“A sailor chooses the wind that takes the ship from a safe port. Ah, yes, but once you're abroad, as you have seen, winds have a mind of their own. Be careful, Charlotte, careful of the wind you choose.” 
~Avi, The True Confessions of Charlotte Doyle

“For example, the wind has its reasons. We just don't notice as we go about our lives. But then, at some point, we are made to notice. The wind envelops you with a certain purpose in mind, and it rocks you. The wind knows everything that's inside you. And not just the wind. Everything, including a stone. They all know us very well. From top to bottom. It only occurs to us at certain times. And all we can do is go with those things. As we take them in, we survive, and deepen.”  
 ~Haruki Murakami  "Hear The Wind Sing"

The sun shone high those few summer days
Left us in a soft, wide-eyed haze
It shone like gold
It shone like gold

But just as the moon it shines straight
So dawn goes down today
No gold can stay
No gold can stay

What if our hard work ends in despair?
What if the road won't take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved's not enough?
What if I fall and can't bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold

We're on our way through rugged land
Top of that mountain we wanted to stand
With hearts of gold
With hearts of gold

But there is only forward, no other way
Tomorrow was your hope at the end of the day
And gold turns gray
And gold turns gray

What if our hard work ends in despair?
What if the road won't take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved's not enough?
What if I fall and can't bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold

All of my dreams, they fall and form a bridge
Of memories where I can get back
All of my dreams, they fall and form a bridge
Of memories where I can't get back to you

What if our hard work ends in despair?
What if the road won't take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved's not enough?
What if I fall and can't bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold

Could stay gold
Stay gold

(Song:  Stay Gold  by First Aid Kit)

Five Years

Death took you from us
Unimaginable loss.
Unbearable pain.

Cancer came calling
It ravaged your strong body
Stealing your dreams

Stealing my dreams
Plunging us into darkness
Forsaken and lost.

Struggling for air
The search for meaning futile
Still feeling hopeless.

© big D  2014

“The heart dies a slow death, shedding each hope like leaves until one day there are none. No hopes. Nothing remains.”      ~Arthur Golden, Memoirs of a Geisha 

Life In Slow Motion

When you get admitted to the cancer center they do this test on all the patients to assess their cognitive function to get a baseline.  So then when the patient is all looped up and spaced out on drugs for pain or sedation, they can determine how far off the curve you have fallen.  This is Nick's first one of these assessments.  This is the second page of the test.

They would hand him the paper and say, "do what it tells you to do on the paper."  So of course, he would close his eyes.  Then they would have him trace the shapes on the paper and then draw them.  Then they would ask him to write something.  Nick would always write something and hand the paper back to the nurse.  I never knew what he wrote.  I always wanted to ask him what he wrote, but I never did, feeling like an intruder in my own child's life or like it was some kind of invasion of his privacy.  After Nick would hand back the paper, the nurse would always read what he wrote.  Sometimes looks were exchanged or the nurse would comment on what Nick had written.  After several of these exchanges,  I sometimes wanted to jump up and tear the paper out of the nurse's hand and say, "Let me read that...he is my son. I should get to read what he is writing."  But I never did.

Instead, when I returned to Hopkins after Nick's death, to go through all of his medical records in hopes of bringing a lawsuit against the hospital, this is when I found all of these papers!  This is when I read them for the first time.  As I went through the reams and reams of paper which represented the horror of his life with cancer and the months and months of his life he spent there...this is when I found the papers, this is when I read what Nick wrote with each new admission back to hospital.  These admissions always felt like defeat, like a battle lost, like another step toward losing the war.  Nick hated to go back, he hated to be admitted and he never liked this stupid test.

I have been meaning to present these in the order that Nick wrote them over the timeline that they were written.  I am now finally doing that...even now it is so painful to see his words, to see his handwriting, to know his thoughts and wishes, and worst of all to know that none of them were ever fulfilled.  They reflect the beauty of his heart, his spirit, his soul...the essence of who he was in every way.  To me, they are nothing short of heartbreaking and gut wrenching.

This is the first one....this test was done on the second day of that first fateful admission, when we first found out Nick had leukemia.  He was too sick to do it on the first day.  His words...

"I wish I was at the sea."

“My soul is full of longing for the secret of the sea,
and the heart of the great ocean sends a thrilling pulse through me.” 
~Henry Wordsworth Longfellow

“There was a single blue line of crayon drawn across every wall in the house. What does it mean? I asked. A pirate needs the sight of the sea, he said and then he pulled his eye patch down and turned and sailed away.”   ~Brian Andreas

I feel like my life continues to be laden with grief, mourning and sadness.  I stopped writing because I really had nothing new to say.  I still don't.  The melancholy of David Gray's song touches me and I feel like my life is in slow motion somehow, and yet, the time of my life runs past me, as if mocking my fate. It is difficult to explain the abyss, the quicksand, the darkness....I am doing the best I can, which most days does not seem near good enough. I let others speak now, for they do so with more eloquence and grace.  I have no energy for such things it seems.  But the calender forced my hand on this one and so it begins....

Midnight

Another "new year" begins without you Nick.

It seems like every year it gets worse...

For years I worked New Year's Eve and New Years day so that I could be off for Christmas.

So many times I spent New Year's Eve driving home in the car as the clock hit midnight.

Then there were the years between when i stopped working as a nurse and your leukemia diagnosis,

that was December 2004 through December 2007.

I don't know what I did on New Year's Eve for those years. 

Then there was New Year's Eve 2008 - we spent that one in the hospital...I will never forget.

Then there was New Year's Eve - December 2009 - you were dead for that one...that was the first one without you, with more to follow - all equal parts sadness, bitterness, pain, longing, anger....

December 2010, December 2011, December 2012,

and now December 2013....leading to the start of another year without you.   This year I couldn't wait for the holidays to be OVER.  So now they are....I still cannot say the words "Happy New Year"  or "Happy" anything for that matter....the word "happy" does not exist in my vocabulary now.  I am not happy...is that because Nickolas is dead and gone from my life forever?  Well I would say that is a huge part of it.  I have been in the dark so long, I cannot imagine my life any other way.  And it seems that whenever I get even a glimpse of pure joy, it is snatched away from me in the blink of an eye...and I am wonder when or if I will ever be happy again.  And I wonder do I really want to keep living like this for how much longer?  I will never understand....

“I would say happy new year but it's not happy; it's exactly the same as last year except colder. ”   ~Robert Clark

“Hope...smiles from the threshold of the year to come, 

Whispering 'it will be happier'...” ~Alfred Tennyson

“No matter how much time passes, no matter what takes place in the interim, there are some things we can never assign to oblivion, memories we can never rub away.”   ~Haruki Murakami

“They say you can't stop time, that it is a constant and waits for no one. They're wrong. Time slows down when you want it to speed up. It goes too fast when you're having fun. And it stops. It stops, dead in it's tracks, when the unthinkable occurs. Time is not neutral, it makes no sense, and it bears no logic. It has nothing to do with nature or fairness or physics. 

Time is cruel.
And it's as simple as that.”  ~Heather Killough-Walden

Blue Christmas

It will always be a blue Christmas without you my son.
I remember so vividly our last Christmas together...
I only wish it had been happier.
I only wish  my deepest fears had not been realized.
I miss you today and every single day of my life since you left this world.
I am so blue without you...

This description of the meaning of the color blue reminds me of so many things about you Nickolas...my beautiful son.

This color is one of trust, honesty and loyalty. It is sincere, reserved and quiet, and doesn't like to make a fuss or draw attention. It hates confrontation, and likes to do things in its own way.

Blue is reliable and responsible. This color exhibits an inner security and confidence. You can rely on it to take control and do the right thing in difficult times. It has a need for order and direction in its life, including its living and work spaces.

This is a color that seeks peace and tranquility above everything else, promoting both physical and mental relaxation. It reduces stress, creating a sense of calmness, relaxation and order - we certainly feel a sense of calm if we lie on our backs and look into a bright blue cloudless sky. It slows the metabolism. The paler the blue the more freedom we feel.

In the meaning of colors, blue relates to one-to-one communication, especially communication using the voice - speaking the truth through verbal self-expression - it is the teacher, the public speaker.

The color blue is idealistic, enhancing self-expression and our ability to communicate our needs and wants. It inspires higher ideals.

Blue's wisdom comes from its higher level of intelligence, a spiritual perspective.

Blue is the color of the spirit, devotion and religious study. It enhances contemplation and prayer. On the other hand, blue's devotion can be to any cause or concept it believes in, including devotion to family or work.

Blue is the helper, the rescuer, the friend in need. It's success is defined by the quality and quantity of its relationships. It is a giver, not a taker. It likes to build strong trusting relationships and becomes deeply hurt if that trust is betrayed.

Blue is conservative and predictable, a safe and non-threatening color, and the most universally liked color of all, probably because it is safe and non-threatening. At the same time blue is persistent and determined to succeed in whichever endeavors it pursues.

Change is difficult for blue. It is inflexible and when faced with a new or different idea, it considers it, analyzes it, thinks it over slowly and then tries to make it fit its own acceptable version of reality.

Blue is nostalgic. It is a color that lives in the past, relating everything in the present and the future to experiences in the past.

“No truth can cure the sadness we feel from losing a loved one. No truth, no sincerity, no strength, no kindness, can cure that sorrow. All we can do is see that sadness through to the end and learn something from it, but what we learn will be no help in facing the next sadness that comes to us without warning.”   ~Haruki Murakami

Time Is Spinning Silk

My beautiful son
You are gone forever now
Never to return.

© big D 2013

Another holiday ticks
off the calender.
I do not live.
I merely exist.
Who gives a fuck about
the holidays?
I don't care about any of it.
It seems there is nothing
that can take away the pain
of losing you.
There was a glimpse of light, a healing spirit
For a brief moment in time
Where I thought I might actually understand
about this thing called "hope."
But then the light was snuffed out,
Just like your life,
And it was gone.
I am resigned to living in black and grey.
There is no color in my world.
I am tired and have no strength to fight.
I do not want to be judged.
I do not want to be lectured.
I do not want to be told what to do, or think or say...
My son is dead....
I just want it to stop hurting.
How will it ever stop hurting?

“There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometimes lose sight of this force when there is suffering, too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.” 

~ Mother Teresa

“At some point we all look up and realize we are lost in a maze.”   ~John Green

“If there was a God, he'd guide the winds, let them blow for me so that, with a tug of my string, I'd cut loose my pain, my longing.”   ~Khaled Hosseini

So slowly I'm losing 
who I've sworn to be. 
a promise in pencil 
that years have made so hard to read. 
I've spent my life building walls 
brick by brick and bruise by bruise... 
a birdcage religion that whispered me to sleep. 

but time is spinning silk 
that coils ruthlessly; 
with the devil's patience, 
it binds my hands so quietly 
that soon it becomes a part of me. 

so soften these edges and straighten out my tie. 
and help me remember 
the hope that I have compromised. 

please be a broken record for me.

(Song:  Birdcage Religion  Sleeping At Last)

All Alone

Unraveling still.

Even as I clutch at this 

Stark and dismal truth.

© big D 2013

So foolish to think 

I could get out of this...

A cruel fate I must learn to accept.

There is no hope.  

Only darkness and pain.

“I don’t want to be in pain anymore. I want to be done, to be left unburdened and naked, to tear the hurt off my body like layers of clothes. At the end of the trail I stop and bend forward, hands on my knees, to catch my breath. I’m not healed, but for this moment, I’m better.”  

 ~ Kerry Cohen, Loose Girl: A memoir of Promiscuity

I’m looking for a way out
For a place that no one knows
Please take me away now
Somewhere it don’t feel so cold

Troubles on my mind
Troubles on my mind
For the rest of the days I’ve cried
For the rest of the days I’ve cried

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
For the time of my life

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
Gonna go where the spirit guides

All alone

My silhouette is fading
Past the point of safe return
Now my body’s aching
As both ends of the candle burn

My heart is beating slow
My heart is beating slow
It’s worn me to the bone
It’s worn me to the bone

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
For the time of my life

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
Gonna go where the spirit guides

All alone
All alone
All alone

(Song "Paradise"  by City and Colour)

Gone Where I Cannot Follow

Nickolas
Thirty-one years ago today
The day you were born,
Your birth brought so much joy into my world.

Today...
I have nothing to fill the void your death
Four years without you...
The pain remains a constant
The sorrow never ending.
The emptiness unbearable.

It is your birthday Nickolas and you are not here to celebrate with us.

Therefore, there is nothing to celebrate, only memories not made and milestones not met.
Why would we mark the birthday of one who is no longer living?  Nickolas will be forever "26" - he will never reach another age, we will never know the man he might have been.  Instead we mark the years he has been gone from us...I cannot bear to consider how many more there will be.  Trying to "make the best" of a horrible and agonizingly painful experience that has marked me as "damaged goods" for the rest of my days.
Tired of feeling this way....tired of being judged.  Tired of it all....hope seems beyond my reach and unattainable.

“There should be a statute of limitation on grief. A rulebook that says it is all right to wake up crying, but only for a month. That after 42 days you will no longer turn with your heart racing, certain you have heard her call out your name. That there will be no fine imposed if you feel the need to clean out her desk; take down her artwork from the refrigerator; turn over a school portrait as you pass - if only because it cuts you fresh again to see it. That it's okay to measure the time she has been gone, the way we once measured her birthdays.”    ~ Jodi Picoult, My Sister's Keeper

“I have lived with you and loved you, and now you are gone. Gone where I cannot follow, until I have finished all of my days.”  ~Victoria Hanely, The Seer and the Sword

Four Years

Four years without you
My heart is filled with longing
To see you again.

Four long years without
Your smile, your laughter, your love,
Your kind thoughts and words.

Four years of anguish
Such intolerable pain
Searching for release.

Finding none.

© big D 2013

Dark Surprise

Your death was a dark surprise....I should have seen it coming.  I knew and yet, I was so terrified of losing you.  I was losing my mind as all control ebbed from my body like blood flowing from a gaping wound. On that day, I stood frozen, like a mad woman, terrorized by days of watching you being tortured, watching the suffering you endured, in the name of living.  I stood there in so much pain, while your death came barreling down the dark road your journey through cancer had become. We tried to stop it, but we had no chance against this grim reaper. Nickolas, you fought so hard for so long; your strength, your courage, your spirit, even our love was no match for the tenacity of this enemy.  I stood watching in horror as you were taken from the ventilator, unable to move, unable to scream, unable to accept the harsh reality, that you were going to take your last breath and you would be gone from us forever. To this day, almost four years later, I cannot believe it, I cannot understand it, and I cannot accept it.  I have so many regrets and so much pain. The horrible pain of that day remains a part of my daily existence.  I don't know how or why I continue to survive it.  So sad all the time and missing you more than i will ever be able to say.  Words cannot express the anguish and torment of this existence.  I cannot find a way out of this darkness. I love you my sweet boy, always and forever, Mom

“It is a curious thing, the death of a loved one. We all know that our time in this world is limited, and that eventually all of us will end up underneath some sheet, never to wake up. And yet it is always a surprise when it happens to someone we know. It is like walking up the stairs to your bedroom in the dark, and thinking there is one more stair than there is. Your foot falls down, through the air, and there is a sickly moment of dark surprise as you try and readjust the way you thought of things.” 
~ Lemony Snicket, Horseradish: Bitter Truths You Can't Avoid

“For what is it to die but to stand naked in the wind and to melt into the sun? And when the earth shall claim your limbs, then shall you truly dance.”   ~Kahlil Gibran

Memorial Day 2013

Before I Went Under

Detached from emotions
I decided to derail this train.
Determined to let you know
I defy you to take my place on this hellacious track.
Derisive comments will not sway me.
I deeply feel the pain of your judgement.
Detained forever.
My denuded life lies in tatters at my feet.
Delusional, maybe.
Beware the deceptive practices of the trusted.
Their deceit will lead to death.
Debate is useless.
I declare the futility at an end.
Default plan B.
My decay has already begun.

© big D 2013

Looking out from underneath, 
Fractured moonlight on the sea
Reflections still look the same to me, 
As before I went under.

And it's peaceful in the deep, 
Cause either way (Cathedral, where) you cannot breathe, 
No need to pray, no need to speak
Now I am under, Oh.

And it's breaking over me, 
A thousand miles down (on)to the sea bed, 
Found the place to rest my head.

Never let me go, never let me go.
Never let me go, never let me go.

And the arms of the ocean are carrying me, 
And all this devotion was rushing over (out of) me, 
And the crashes are heaven, for a sinner like me, 
But the arms of the ocean deliver me.

Though the pressure's hard to take, 
It's the only way I can escape, 
It seems a heavy choice to make, 
But now I am under, Oh.

And it's breaking over me, 
A thousand miles down to the sea bed, 
Found the place to rest my head.

Never let me go, never let me go.
Never let me go, never let me go.

And the arms of the ocean are carrying me, 
And all this devotion was rushing over (out of) me, 
And the crashes are heaven, for a sinner like me, 
But the arms of the ocean deliver me.

And it's over, 
And I'm going under, 
But I'm not giving up! 
I'm just giving in.

Oh, slipping underneath.
Oh, so cold, but so sweet.

(Music & Lyrics - "Never Let Me Go"    Florence and the Machine

Lost Identity

I've Joined The Circus

You are my heart.  I cry for you every night.
You would have been thirty years old on September 11, 2012.
But you will be forever 26. No more birthdays for you.
Mickey is wearing your hat. All your hats are still in your room.
Tim Sunny-Bear remembers days of love and laughter.
I found your teenage mutant Ninja turtle in the attic.
You were always such a sweet boy, full of joyful happiness and smiles.
I search for you everywhere.  All paths lead nowhere.
No matter how far I walk I cannot reach you.
Your belt is still on your bed with all the extra holes you punched in it so you could hold up your pants.
That belt reminds me of your emaciated frame and how hard it was to fight that cancer
that ravaged your body.
The pounds dropping away like the days of your life...
Shattered and broken, dark clouds swirling.
The bluebird of happiness died and he sings no more.
I have lost my faith...
There is no god that would let this happen to my sweet boy.
I wanted your  baby footprints...they threw them away.
I wanted your fingerprint....no one thought to ask.
Your dream catcher still hangs from the ceiling over your bed.
There are no more bad dreams for you my son.
No dreams of any kind...no future for you.
No future for me.
You are my sunset, my autumn leaves.
You are one of the most beautiful things I ever created.
When you left, all the pages in my book turned black and gray.
Everything is such a mess.
I only want you to come home. Please come home.
If you don't come home...
I am going to run away and find a place to start over.
I am going to find a place...
Where no one knows the depths of my sadness or my pain.

© big D 2013

Stricken With A Great Sadness

“The way sadness works is one of the strange riddles of the world. If you are stricken with a great sadness, you may feel as if you have been set aflame, not only because of the enormous pain, but also because your sadness may spread over your life, like smoke from an enormous fire. You might find it difficult to see anything but your own sadness, the way smoke can cover a landscape so that all anyone can see is black. You may find that if someone pours water all over you, you are damp and distracted, but not cured of your sadness, the way a fire department can douse a fire but never recover what has been burnt down.”
~ Lemony Snicket, The Bad Beginning

I love you always and forever my sweet boy. I miss you with every piece of my broken heart.  Please come home.  Mom xo

Sweet Son

Had a dream about you last night.
We were in a candy store.
Buying candy.
I saw your face.
You smiled at me.
That's all I remember.
So horrible that I cannot even capture you in my dreams.
They fade so fast.
They don't seem real.
Sometimes I barely remember.
I dreamed of you.
Then I remember you are gone.
Gone forever.
So now I dream about you in a candy store.
What kind of candy do you want my sweet boy.
I love you more than a wagon full of puppies.
Always and forever you are in my heart.
Please come home soon, so we can go buy some
real candy.

Find Me

Are things different now?
More time has passed.
1,257 days, 22 hours, 40 minutes
Sinking deeper into the quicksand of pain and loneliness.
The only problem is...there is  nothing quick about it.
It is like a faucet slowly dripping, it never stops.
The acid of your death eats away at whatever I have left.
It burns like fire, putting holes in the shattered remnants of my soul.
Pulling the dark shroud around me, I close out the light and try to protect myself from the incessant beating.
The erosion continues day after day.
Soon there will be nothing left of me.
I gather what is left of my shield and hunker down.
Sometimes I hear footsteps and I wait.
Someone has come looking for me.
Ever so gently the cloak is lifted.
The light blinds me with shards of hope.
A soft voice penetrates the walls of my heart.
"I am here.  It is time to go.  Come with me, I will protect you."
I wonder how he found me...but I do not care.  At last, I am free.

© Big D 2013

Find me, here in your arms
Now I'm wondering where you've always been
And blindly, I came to you
Knowing you'd breathe new life from within
Ooh and you sleep, here in my arms
Where the world just shuts down for awhile
And blindly, you came to me
Finding peace and belief in this smile
Find some peace and belief in this smile
Well find some peace and belief in this smile

I can't get enough of you

(Song "Find Me"  Boyce Ave)

Can't Look At the Stars - New Year's Day 2013

“We all want to break our orbits, float like a satellite gone wild in space, run the risk of disintegration. We all want to take our lives in our own hands and hurl them out among the stars.”  ~David Bottoms

“Hope drowned in shadows
emerges fiercely splendid––
boldly angelic.”  ~Aberihani, The River of Winged Dreams


“Rather than turning the page, it's much easier to just throw the book away.” ~Anthony Liccione


Dearest Nickolas, I am missing you so much on this start of another year, our fourth New Year's without you.  This time always makes me sad and withdrawn. I cannot help but to remember back to the last New Year holiday we spent together in the hospital, our dreams of your recovery shattered by a relapse diagnosis.  I try to forget those awful days, but they cannot be erased from my mind.  I love you more than a wagon full of puppies. Please come home soon Nick, I love you always and forever.  Mom xo

Living Parallel Lives

I cannot say "Merry" Christmas anymore.  I don't know if I will ever be able to say it.  The best I can do is wish "peace" for those who are able to celebrate...I have placed an excerpt from a CaringBridge site below, it gives great insight into what it is like to go through life after losing a child...of any age!  Sara gave me the most wonderful gift this year.  She had guitar picks personalized with a picture of Nickolas on one side and part of the Emerson quote we used at Nick's memorial. The Emerson quote is, "Live in the sunshine, swim the sea, and drink the wild air."  The back of the pick say, "Drink the wild air."  I am so far from being able to do that right now...the guitar has been a blessing for me in some way...the music is soothing and I feel closer to Nickolas when I play.  I don't understand why and I don't need to understand.  I just do...

Here is the excerpt...this is another Mom who lost her son to cancer (neuroblastoma).  Her son was amazing and awesome too.  It has been a year since they had to say goodbye to their son.

I attend a mothers' bereavement group once a month.  Wonderful women who walk this same journey and "know" in a way no one else possibly can.  Last month there were two new members.  This is of course a group where you hate to welcome new members because it means another mother has buried her child.  One of these moms whose loss was very recent tearfully asked "does it get better?"  Part question, part plea.  We've all asked it.  Some of these moms are several years into this journey and offered their thoughts.  Basically, no, it does not get better.  It gets different.  You learn to function.  One put it in a way that was absolutely perfect.  I don't remember the exact words, but she said in effect it's like you start living two parallel lives, as if you're simultaneously on two side by side train tracks.  One track is living in The World with everyone else, doing the normal things of work, grocery shopping, socializing, etc. and AT THE EXACT SAME TIME you're also living in this other world of unspeakable pain.  Two parallel lives on two parallel tracks. 

So, on one track, we put the Christmas tree up, shop, wrap, bake, send cards, eventually stop switching the radio station when the Christmas song comes on and "celebrate" as it were.  I'll be honest, it's all quite forced.  Not that we don't enjoy getting together with family and close friends.  We really do.  But on that other track all we feel is the emptiness of another Christmas without our (son/daughter.)  The wrongness of it all.  The desire to just get it over with for another year. 

So as I spend another year on the two tracks myself I can tell  you it ain't no fun whatsoever!  The world of "unspeakable pain" is real and there is nothing legal to take to make it STOP!!  I will always be on two tracks for the rest of my life...that in itself is something extremely hard to wrap my mind around. 

And finally this....

“... If the dead can come back to this earth and move unseen around those they loved, I shall always be near you; in the garish day and in the darkest night—amidst your happiest scenes and gloomiest hours—always, always; and if there be a soft breeze upon your cheek, it shall be my breath; or if the cool air fans your throbbing temple, it shall be my spirit passing by.”  ~Paul Hoffman

Another Christmas Eve Without You

There are no words to describe the pain of losing your child. No words to describe the painful reality that they will never be a part of this physical world ever again. 

On this, our fourth Christmas without Nickolas, I am longing for my son to be here with us.  My heart cries out for him every day and there is no answer...only the silent echoes of pain and loss. 

I sit alone here with the undecorated, unlit tree that was dragged down from the attic by Glenn and Sara.  They didn't decorate it, they don't even plug it in.  I don't know why they brought it down. The holiday has never been the same since I sat here in terror wondering if Nick's last Christmas would be his last....I wanted to be wrong so badly.  When I went to my brother's house for a family gathering yesterday, I was taken aback by the stark contrast between our homes.  It seems like the grief is palpable here....it colors everything we do and say and feel.  I don't know how to change it...I don't know if I want to....I don't know anything. 
                                 I am lost.      I am lost.      I am lost.

“How could you go about choosing something that would hold the half of your heart you had to bury?”  ~Jody Picoult

“My sister will die over and over again for the rest of my life. Grief is forever. It doesn't go away; it becomes a part of you, step for step, breath for breath. I will never stop grieving Bailey because I will never stop loving her. That's just how it is. Grief and love are conjoined, you don't get one without the other. All I can do is love her, and love the world, emulate her by living with daring and spirit and joy.”  ~Jandy Nelson, The Sky Is Everywhere

“Adam is crying and somewhere inside of me I am crying, too, because I'm feeling things at last. I'm feeling not just the physical pain, but all that I have lost, and it is profound and catastrophic and will leave a crater in me that nothing will ever fill.”  ~Gayle Forman, If I Stay

“In time, in time they tell me, I'll not feel so bad. I don't want time to heal me. There's a reason I'm like this.
I want time to set me ugly and knotted with loss of you, marking me. I won't smooth you away.
I can't say goodbye.” ~ China Mieville, The Scar

I love you always and forever my sweet boy.  Please come home soon.  Mom xo

Malady of the Soul

With what a deep devotedness of woe
I wept thy absence - o'er and o'er again
Thinking of thee, still thee, till thought grew pain,
And memory, like a drop that, night and day,
Falls cold and ceaseless, wore my heart away! ~Thomas Moore

I have no words to say what I want to say, to describe what is my day-to-day existence. 
Doesn't seem to matter anyway.
Another holiday season is here...the pain clings to my soul like the grip of death that stole my son from me. 

It's Over

Where are you my son?
Are you waiting for me somewhere?
Will I ever see you again?

The pain of losing you pierces my soul and the anger and bitterness spews out, ruining everything.

I hate myself sometimes.
I hate that you are dead.
I hate that there is nothing that will change that fact.
I hate that I have to feel this way every single day, digging my way through the darkness and the sadness.

Who wants to be me...?

It`s Over 

Angels will carry you home tonight,
I cannot carry you now.
Love you have taught me the meaning of life,
But you are leaving me now.
Take me too, Oh God where are you?

And I can’t believe it’s over, it’s over, it’s over.
It’s torture to breathe, now it’s over, it’s over, it’s over.

Spare me your reasons and don’t tell me lies,
All things aren’t better with time.
How can a heart hurt as badly as mine,
And still go on beating inside?
Take me too, It’s not me without you.

Please, Please, I don’t know what else to say.
Please, Please, don’t take my sunshine away.



(Lyrics  by Kendall Payne)

Here is another blog written by a Mom who lost her little boy to cancer....her words in this post are right on point.  Can you try to understand?  Please....!

Lonely Tree

Sitting, staring at the blank page.
No words seem to come.
How does it happen...this numbness?
How much longer will I feel this way?
Alone in a void of silence and pain.
Should I feel good that I am not crying every single day?
Nickolas seems to drift farther and farther from me every day.
Memories cannot replace a loved one.
It's not possible.
It's not the same.
Nothing is the same.
Nothing will ever be the same.
I want to scream.
I want to break things.
I want to be someone else.
How many more days?
How much longer?

Started to go through Nick's things....
"I know...let's make a quilt out of Nick's shirts, that will make everybody feel better right?"

I look around Nick's room, his things gathering dust as my heart gathers pain. 
Soon the holidays will be here....a never ending cycle.

Running Away

"Running away never solved anything!" she said with great authority and no practical knowledge of what she was talking about.

"It seems like a good idea to me."

I  just want to disappear...still. 

I am invisible, so I guess I have already disappeared. 

Question below was taken from The Compassionate Friend Facebook page:

"Does anyone else have days when you just want it to be okay to feel miserable? To not feel like you have to be strong in public and act like you are okay when really you are dying inside and you want that to just be okay for that day." 

So tired of saying I am "ok" when I am not.  So tired....

9/11 - The Day My Son Was Born

Today Nickolas would have been thirty years old.  Under normal circumstances, a milestone for most young adults and their families.  I like to imagine that Nick would be married by now and maybe even have a little baby of his own....breaks my heart all over again.  On this what would have been your "30th" birthday my beloved first-born son, know that you are well-loved, we treasure every moment you were with us.  I miss you so much, sometimes I cannot breathe.  The missing is a constant ache in my soul, it will never leave me.  Today Sara went on a hike, I hope you saw her there on the path and brushed her cheek with the gentle wind of your spirit. Your Dad and I went to Miss Shirley's and ate some good food in your memory. Did you come and sit with us and eat something too? I wondered what you would order?  I cried as I tried to remember what kind of birthday cake you would like today.  Please come home soon and get your birthday hug.  What I wouldn't give to see you come through that door again. I love you more than a wagon full of puppies.